Month: October 2010

Day 15

Geli has been admitted to the hospital again for the second dose of this cycle’s chemotherapy.

The first dose went absolutely as well as it possibly could have gone while she was in the hospital.

The way this round of chemo works is that Angelica is getting 3 different types of chemo for the 9 weeks of this cycle. One she takes every day by pill. The other two she gets once every two weeks. One she gets over 15 minutes through her IV port in her chest and the third one is a High Dose drug that is given over a 24 hour period.

Geli had been so sick for the two weeks leading up to the start of this cycle and had only just started to feel slightly better when we had to start this cycle. We really weren’t sure what to expect and the thing that everyone had been “freaking about” were the mouth sores. Considering that Gel hadn’t been eating really much of anything and had ended up getting a feeding tube, we really didn’t know what we were getting into. Often the fear of the unknown is WAY WORSE than what actually ends up happening.

Geli started the Chemo on a Thursday and the best case scenario was that the chemo would flush out of her system and that she’d get to come home on the Sunday. They give her the high dose over a 24 hour period and then they give the antidote to the chemo, because if it was allowed to continue on in her body, it would kill her. They they flush her system and wait until the concentration of the chemo drug in her body is down below a certain level. Imagine our surprise when they informed us that she was able to go…..on Sunday. What was even more amazing was that she was feeling pretty good considering how poorly she had been feeling.

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This was right after the tube had been placed.
She was so hungry and was so looking forward to not feeling like she was starving.
At this point she hadn’t eaten in 4-5 days.

I was a little nervous because she had the feeding tube in and now we had to deal with all of the fun that brings, only at home…..which meant that we were responsibly for it all. AAAAAWWWKKK! Basically we were feeding her meal replacement shakes or formula. But, we were so excited that she was doing well(ish) and that she had cleared the chemo in a great time.

She did end up getting some mouth sores right all around the inside edges of her lips and they hurt pretty bad. Like she wouldn’t drink from a glass because it hurt that bad. She was using a syringe to shoot water into her mouth. It’s not a fun thing to deal with and yet, she is such a trooper.

And then on Tuesday night, in the middle of the night, she started barfing. We finally got her anti-nausea meds back on board and by Friday morning she was starting to feel better again.

The worse part was on Thursday. She managed to barf up her feeding tube. And I put it back in. I was freaking and panicking on the inside but on the outside I acted so calm and like it was no big deal…….I routinely place feeding tubes up my children’s noses and down their throats and into their stomachs. And, if it weren’t bad enough to just do it the once…..she managed to throw the tube of twice more that day. Once in the evening and then again in the middle of the night…..After the third time, she said enough was enough and that we’d think about it some more in the morning….this of course freaked me out because she still wasn’t eating anything or drinking anything and obviously was still barfing.

But then, she woke up on Friday morning, and between the anti-nausea meds and whatever ever else was working…..she was feeling a bit better. Not up to par, but definitely better. And so we left the tube out and I tried not to panic about what she wasn’t eating and drinking and so desperately tried to focus on what she was eating and drinking….which was precious little, but compared to the past few days was HUGE!

Every day since then she has gotten better and at this point, for the past 3-4 days, she is feeling the best that she’s felt in almost 3 months. And even now, she’s still not “normal” just WAY better than she has been.

And so our plan going into today is to get through the next 4 days of treatment and hopefully be able to come home on Sunday. We are doing ALL we can to minimize the mouth sores and will start the anti-nausea meds on Monday or Tuesday in the hopes of avoiding the icky feeling and vomiting.

If you are looking for things to be praying for, please pray
1) that there will be no mouth sores this time around.
2) that Geli will continue to feel stronger and better and that she won’t end up getting sick
3) that her weight would continue to rise (she lost more than 15 pounds)
4) that all of us would remain healthy
5) that peace would reign in our hearts and in the home
6) that Jon and Geli would have some great “moments” in the hospital
7) that the kids and I would have some great “moments” together at home
8) that everyone would get great rest….sleep is often elusive around here these days

I’m sure that as soon as I post this, that I’ll remember something else…..Oh well, if I do – I’ll just add it later.

Thanks so much for your love and support. I cannot fully explain just how appreciative we are of all of you.

Thank You!

Finding Joy

Right after Geli was admitted to the hospital (mid-Sept), I was really struggling.

I was sad and angry and upset and frustrated and so many other chaotic emotions. I was sitting on my couch feeling sorry for myself and right in the middle of a fairly awesome pity party, I decided to stop. Feeling sorry for myself wasn’t helping me very much and so I thought I’d try to look for things around me that I find joy in.

Rainbow of Diaper Happiness

Right in front of me, on my ottoman, was my diaper basket. It’s where I keep my diapers, wipes, a few burp cloths and receiving blankets and sometimes some books or toys. I had just re-stocked it earlier in the day and I had created a rainbow from the diapers. The sun was shining in through my windows and….well…..it made me smile a little. So I went and got the camera and decided to take a few pictures of some things that made me feel happy.

Sleeping Baby

The baby was sleeping, and so I figured that at the very least I had a few minutes to look around and freeze those moments for myself. It’s so nice when babies sleep. Mmmmmmmmmm snuggly babies! Just the thought makes me smile.

Mostly Clean Floors

At first, it was a little bit slow to find the things that brought me joy, but once I started really looking…….I realized that my floors were swept and mopped and man, did they ever look good. I never used to clean my floors all that often and now I have to and while I don’t enjoy cleaning them…..I sure do enjoy them cleaned.

Perfectly Moist Banana Bread

As I wandered into the kitchen, I saw the vegan Banana Bread Muffins that I had made earlier that day…….and they were DELICIOUS! Another smile!

Birthday Color

On the corner of the counter were the supplies from the Birthday party that we’d just had for Xani and the bright cheery colors made me smile again.

All of this smiling was pretty amazing, as I’d spent most of the two previous days crying and feeling quite sorry for myself.

Folded Laundry

As I walked into the dining room, I saw a laundry basket FULL and OVERFLOWING with neat rows of folded laundry. I love the orderliness of perfectly folded stacks of laundry. If they are all sorted by person or room…..even better. (Those are little boy underwear and not Jon’s, just in case y’all were wondering!)

Sweet Boy

Jeremy had come home from school that day because he said he was not feeling well. He really wasn’t acting or looking too terribly sick, but he did look so cuddly and sweet all snuggled into the couch with his jammies on. I sure love that sweet boy of mine.

Blue Skies Smiling at Me

I looked outside my window and the sky was so blue….this picture doesn’t even represent just how glorious the sky looked that day.

Stages

As I stood out on my deck to take the picture of the sky, I looked down onto the patio and saw my poor neglected hanging basket. In the chaos of this summer…..well……well, it mostly died. So we had taken it down from the front door area and moved it to the patio before we threw it away. With the rain we had recently had, some of the flowers that were apparently only MOSTLY dead had managed to come back to life. I loved that in the one plant, there were the 3 stages of life. There was the young new growth, the blooming flower and the dried out dead pieces.

My Gorgeous Backyard

We have the most amazing backyard. It’s HUGE and the kids LOVE to play back there. As much as I’d love to be in our own house and not in a townhouse….there are some amazing advantages to living here right now; and this is one of those many advantages.

After I took all these pictures, the kids came home from school and we had a great afternoon and evening. I need to remember, more often, to STOP and to LOOK for the things around me that bring me joy instead of focusing on all the crap in my life. Seeing all the things that I have right around me that are beautiful and wonderful and focusing on the happy things, really makes a HUGE difference.

Some Catching Up

I’ve got a bunch of pictures that I want to put up here and some stories that got lost in the chaos of the two weeks in the hospital and the subsequent 1 terrible, horrible, no good week that I’ve not blogged about yet….so I’m gonna try to catch up and update all at the same time.  It’ll either be brilliant or a massive verbal diarrhea – We’ll see, eh?

I’ve received a few requests for our address and also a few offers to help out and while I am so appreciative and thankful – this “humbly accepting help” and not just “telling everyone that it’s no big deal, that you can do it all on your own“……this is difficult.  I’ve wanted to respond and say “No, really, we’re fine.  We’re totally okay. We can do this.  Don’t worry about it.”  and yet, it’s not true and so I swallow and breathe and say “thank you” and it feels so wrong and yet I need the help so badly.  What a totally messed up head trip this all is.  Man!

I also wanted to mention that I in no way am belittling the help that we have already received in meals, and gifts and finances and help, especially from our family who have helped so much.  Everyone who has given has made a huge impact and again…..I’m so SO Thankful.  We would not have made it this far without each and everyone of you.

……………

Lets go back…..Way back, before all the crazy hospital time.  Actually, “the crazy” started way before this, but we’re just gonna go back to the day before my birthday….well, there’s a little lead up and then we’re going back to the 17th of September.

Geli had been feeling “off” for quite a while.  It’s been about 9-10 weeks now, but she had been on oral antibiotics for about 6 weeks to try to combat some infection as a result of some ingrown toe nails.  In the 2 weeks before she was hospitalized, she’d been doing REALLY poorly.  The nausea and vomiting was horrid and she was on 3 different anti-nausea meds and was still barfing.  She was not eating a lot and right before they admitted her, she had pretty much stopped eating because she’d been feeling sick and or barfing for over a month and she couldn’t handle the thought of barfing anymore.  Not eating made her feel worse but the fear of barfing was overwhelming her.

We were trying with everything in our power to convince her to eat, mouthful, by mouthful and at the same time we were attempting to get her to drink the recommended 2Litres of water per day.  Trying to gauge how much she was drinking versus how much she was throwing up versus how much she might have actually kept down while at the same time “encouraging” her to drink while she was fighting putting anything inside of her……this whole scenario felt like it was slowly destroying both her and me.

All this time, Xani kept asking about having a birthday party to celebrate her birthday.  Her actual birthday is June 30th.  That would be 14 days from Geli’s diagnosis, and 4 days from Judah’s birth. It was such an insane time.  We had vaguely tried to throw something together over the summer but it didn’t happen and we didn’t try so hard to “force” it to happen.  I just promised her that we’d do something after school started in the fall and we thought that the weekend of the 17, 18, 19 would be good for Geli and her counts too. HA!

As the date got closer, Xani kept asking about it and I very wearily attempted to put something together that would be fun and easy and be a special celebration of her 12th Birthday with her friends.

Angelica helped me to decorate the house on that day and the distraction of it all was good for her. 

We made her a hat just for fun and also made flag streamers.  I dunno if we even got any pictures of the streamers?

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Here they are….you can see them peeking out of the top of the photo…..as I’m going through these pictures and talking about this event…it honestly feels like it was a life time ago and not just under a month ago.  My life has some bizarre “time warp thingy” going on right now.  Everything feels like it happened a million life times ago or like it was yesterday and there is no rhyme or reason to it.

She had asked about having an ice cream cake from Dairy Queen.  We typically don’t eat dairy and ice cream would definitely fall under the “dairy” category.  In the past, I’ve baked a cake that Siah (with a dairy and egg allergy) could eat or else I’ve just bought a cake and gotten something else similar that Siah could eat.  The reason why the rest of us don’t eat dairy, is not because we are allergic to it, but the rest of us have sensitivities to it and it makes us feel pretty nasty if we eat it.

In the middle of all that was happening, I had the bright or maybe insane idea to “make” an ice cream cake.

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I ran out to the store and bought  3 tubs of soy ice cream – one chocolate, one vanilla, and one strawberry – and a bag of Oreo cookies.

I opened up all the cookies and scraped out the insides and then crushed the cookies into crumble.  I let the ice cream soften and then started building.

I put a layer of Chocolate into a pan, and then smooshed the cookie crumble in on top of it.  I, then, added a layer of the strawberry and then the layer of vanilla.  I sprinkled the remainder of the cookie crumble on top  of the cake and added gum balls all around the edges.

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It looked fabulous and tasted great and the best part……..it didn’t make anyone feel icky because of the dairy.

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Xandra had a great party and enjoyed herself.  I was just so glad when it was all over.  How sad is that?

Laying Aside The Pride…….

This is a difficult post for me to write.

I need help.

I hate asking for help. I hate needing help. I’ve taken great pride in being able to take care of my family on my own and now……..now I am coming humbly and asking for help.

Up until now, I’ve been trying to “do” everything and honestly, we are not doing well. I am not doing well. I feel completely overwhelmed and like I am at my breaking point. I, personally, have had one too many melt downs just recently and I need to be a bit stronger to deal with the demands on my time and energy for the long haul. I’d like to say that were it not for all this cancer crap, that I’d be doing okay but…..we are dealing with cancer and 5 kids and all the craziness and chaos that surrounds us.

I’ll do a more detailed update on how we (individually) are all doing soon, but honestly, it’s not pretty. It’s pretty rough over here and we have a long road ahead of us.

There are about 32 weeks of Intensive Chemotherapy Treatment left for Angelica before she starts the maintenance stage. This (the maintenance stage) is when our Doctor has talked about things getting back to more of a normal stage of life. Until then, not counting any time for delays, we are looking at more than 6 months of treatment. That’s a long time!

Right now, we feel like we are barely hanging on and while we’ve had offers of help in the past, we just didn’t know what to do with the help. And…..I thought I’d be able to deal with everything.

And so, to anyone who has offered or is interested, I’m asking for help!

There are so many ways that someone could help. It doesn’t have to be a huge commitment. It could be a one time commitment, or weekly or even monthly. It could be 15 minutes or longer and there are many different ways that you could help. From cleaning, to meals, to helping with the kids, to sending a card or e-mail – anything that helps to lift some of the burden from us would be amazing.

The strain of dealing with the Chemotherapy Treatment is SO MUCH GREATER than just some physical discomfort for Angelica. Walking your child through the Treatment is a full time job. There are the physical issues that come as a result of the treatment like nausea, vomiting, mouth sores, weight loss, lack of appetite, muscle loss due to inactivity as a result of the physical devastation of the chemo drugs, insomnia, fatigue and pain. There is the mental anguish and fear from everything going on and not understanding 100%, to the fear of the unknown and the future. There is the schedule of treatment. It’s a brutal wicked schedule and the treatment center is an hour away from us, more if there is traffic. It is a huge thing to deal with.

Add in 4 other children each with their own specific needs and add on top of that the fear and confusion of having a sister dealing with cancer and a mom and dad who are distracted and overwhelmed and not available in the way that they have been.

Add in 2 jobs, neither of which are being done well. Add in the extra house work and meals and school work, oh and the stress of not having any time to invest in each other or the kids, individually, throw in finances and you have an unbelievable recipe for disaster. This is not even the whole picture……

I’m not trying to whine and complain. Realistically, this is just where we are at.

We are so grateful and thankful for every thing, big and small that we’ve been blessed with. We have been so SO blessed by so many.

If you have offered to help or are interested in helping, we are at the place where we are willing to accept it and we hope that we have an easy way to explain what we need.

We are not expecting anything and right now, we have nothing more than our gratefulness and thankfulness to offer in return.

But…….if you are interested in helping, please click here and see the sheet that we’ve created with some of the details.

So Far, So Good, So Thank You

Today is Day 16 of the most recent trip to the hospital. Angelica has done the first dose of the current phase of treatment and has not shown any side effects. THAT IS AMAZING!!! Even while taking high dose chemo, she is continuing to improve in eating and feeling better. Her feeding tube will likely come out this week and she has not shown any sign of getting mouth sores.

With this phase of chemo she received a large dose of one of the meds through her IV, then waited for a little bit, and then she got what amounts to an antidote and the medication was flushed from her system. This usually takes two to four days and we did it in two…

Which makes today the last day of our stay!!! YAY!!!

We had asked everyone to pray for Angelica, that she would not get side effects, specifically mouth sores and she didn’t. We asked for prayer that we would get back together as a family as soon as possible and by being cleared today, that is exactly what is happening.

Thank you all for your prayers. You are an amazing group of people that are supporting us through this.

Jon